The History of Genetic Alliance

Genetic Alliance was incorporated on October 31, 1986 as the Alliance of Genetic Support Groups. It was founded by Joan O. Weiss with the support and encouragement of Victor McKusick, the father of human genetics. Ms. Weiss, a social worker, led the AGSG until 1996, when Mary Davidson became the second Executive Director. AGSG changed its name to Genetic Alliance in 2000. Sharon F. Terry was elected the President and CEO of Genetic Alliance in 2004. (Stay tuned for more history!)

1997: Coalition for Genetic Fairness is founded to work for Genetic Information Non-discrimination Act
Mary Davidson at White House kickoff for legislation protecting the privacy of genetic information

2004: Joining Our Journeys: One Step at a Time conferenceSharon F. Terry becomes President and CEO.
Wikiadvocacy.org created.

2005:Institute for Advocacy launchedLeadership in Alliance: Leveraging Voices, Advancing a Vision conference
Public campaign begins for NIH Open Access Policy

2006:20th Anniversary Celebration at the National Geographic SocietyExcellence in Advocacy conferenceGenetics Day on the Hill
Genomics, Cancer Care and Advocacy published
Understanding Genetics: A Guide for Patients and Health Professionals published

2007:Eyes on the Prize: Truth Telling about Genetic Testing Summit and monograph publishedGenetics Day on the Hill
Genetic Testing Stories monograph publishedNational Consumer Center for Genetics Resources and Services establishedThe Year of Advocate conference

2009:Discovering Openness in Health Systems conferenceGenetics Day on the HillGeneScreen: A Night of Film on Health and Genetics Newborn Screening SummitTrust It or Trash It: Creating & Assessing Health Information meeting and monograph

2010:Advancing Novel Partnerships conferenceCommunity-Centered Family Health History. Collaboration Across Communities: How Do You Make Research Community-Specific and Universally Relevant? publishedGene Screen: A Night of Film on Health and GeneticsGenetics Day on the Hill
Research!America award: Paul G. Rogers Distinguished Organization Advocacy Award
Testimony before the House Committee on Oversight and Government Reform about Public Access to Federally Funded Research
Testimony before the House Appropriations Committee about gene patenting
Testimony before the House Committee on Science and Technology about standards
Translational Research Enterprise—What Are We To Do? Meeting

2011:25th Anniversary Celebration at the National Geographic Society25th Anniversary Year conferenceBaby’s First Test is launched
Clinical Research Forum’s Public Advocacy AwardGenetics Day on the HillFuture of Public Health Genomics meetingPlatform for Engaging Everyone Responsibly (PEER) created

2013: Advocacy ATLAS: Accessible Tools for Leadership and Advocacy Success launched
Ashoka Changemakers First Prize for PEERBeyond the Bloodspot summitGenesInLife.org is launched
Forbes Best Business Model for Transforming Health Systems for PEER
Newborn Screening Saves Lives Act reauthorizedPowerful Patient Data: Genomics and Family Health History in Health IT summit
Testimony before the Senate HELP committee on newborn screening

2015: Baby’s First Test available in Spanish
Fielded a national needs assessment Understanding Access to and Quality of Genetic Services
Genetic Alliance becomes part of the PCORnet Coordinating CenterPerinatal Nutrition Working Group finds new home in Expecting Health
Platform for Engaging Everyone Responsibly(PEER) recognized in White House conference